John Luke has endured so much but he never lets it break his spirit!
On September 9, 2016, I get a call from John Luke’s daycare that I need to come pick him up because he had spiked a fever of 101.3. The school said, that sickness to start to spread throughout the daycare. Well what was supposed to be a simple ER run did not end up being that. When we got there they ran a few tests and did an x-ray to find out what was wrong. We were told it was Pneumonia. So with that, they gave us antibiotics and sent us home. That following Tuesday he was still not doing better and the antibiotics were not helping. I asked my mother to take him to his pediatrician, to see if there was anything else going on. They barely checked him out and said he would change the antibiotics and if the wheezing did not stop by Thursday to call him and they would run some more test. Well and behold Thursday came around and my child was worse! He screamed that his back was hurting every 30 mins and would sleep all day and that was not like my child. I couldn’t even get him to eat, much less drink.
So I called the pediatrician, like they told me to. Unfortunately, no one ever called me back. When I got home from work, I could see in my son’s eyes that he was miserable. I loaded him up in my car and headed towards Florence and took him to the ER. Within an hour we had been seen. They did x-rays on him and found out he had a great deal of fluid in his right lung & he was also severely dehydrated. Later on that night we were admitted into the Children’s Hospital so they could give him antibiotics and fluids. After about 3 days of antibiotics he still was not doing any better and his breathing was still shallow, so they transferred him to PICU where they could monitor him better.
After a day and a half at PICU, they saw on his x-ray what looked like to be some sort of sack behind his lungs. They wanted to puncture his lung to drain the fluid. They were a little worried so they decided to transfer us to MUSC Children’s Hospital. Let’s just say that was the longest ride ever in an ambulance. Once we arrived at the hospital, we had no idea what we were getting into. What we thought was going to be a simple surgery to remove some fluid buildup, turned out to be something completely worse. After John Luke had received his CT scans later that night we found out he never had pneumonia that it in fact was a tumor that had been growing in his right portion of his lung. After they looked at how it was growing, they knew it was a cancerous mass. Dr. Streck and the hem/onc team set up a surgery date for that following Thursday, which was September 22, 2016. The surgery for him was labeled as high risk due to where it was located and how big it was, it was the size of a baseball. There were no promises being made that they could get it all in one surgery. With the grace of God they managed to do remove 98% of the mass from his lung. Unfortunately, the upper portion of John Luke’s lung was also removed.
After surgery they had to put two chest tubes in to make sure his other lungs did not collapse and also his port for chemotherapy. He also had to have a NG tube placed in and a Foley. After about 5 days after surgery his chest tubes, Foley and NG tube were removed. We slowly weaned him off his pain meds so that we could be transferred to the Oncology Unit across the hall. This is where the waiting and healing game would begin. After surgery they had limited it down to about two different types of cancer they though it could be, one being Neuroblastoma or PPB. About a week after surgery we finally got the results which are still hard to hear. Our son was diagnosed with Plumonary Plueroblastoma Type ll. From what we were told and what we have looked up, our son’s condition is a highly rare form of tumor that is targeted in younger children. It has been a whirl wind and not something we had expected at all. When they say your child has cancer it’s like a slap in the face. And it’s a sickening thought to think that only 4% of the funding from cancer research goes towards our kids.
He underwent all his chemo and radiation until we found out he relapsed with B-Cell Leukemia, and recently he then had to go through a bone marrow transplant. He has endured so much to be as young as he is but he never let it break his spirit. He is always so happy go lucky no matter what has been thrown his way. We are always so grateful for this chance every year because it gives him a chance to have the Christmas he deserves.